#059 Addressing Isolation and Loneliness during the pandemic

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This podcast episode is the audio from a live webinar from the End Loneliness Challenge.

You can watch the webinar by joining the challenge. I’ll email you a link!

People with disabilities are at high risk of isolation and loneliness. The physical distancing required because of the pandemic makes this much worse.

But, we can do something about it!

Listen to the podcast or watch the video for ideas of how kids with disabilities can get and stay connected during school closures and how they can be a light and leader in their community by addressing the isolation and loneliness of others.

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isolation and loneliness


Welcome to the Good Things in Life podcast. Usually this podcast is about supporting kids with intellectual disabilities to build fulfilling lives at home, at school and in the community. But right now we are in the middle of a global pandemic. And so we’re really looking at what we can do in order to address the loneliness and the isolation that is caused by physical distancing recommendations and thinking about what we can do from home. So the following podcast episode is a recording of a webinar that was given as part of the End Loneliness Challenge. The webinar and the slides and additional expert presentations and online support are available if you want to register at goodthingsinlife.org/challenge. And we will get right intowe’ll get right into the webinar. I hope you’re well. I hope you’re safe. I hope you have the resources to be staying away from people as much as humanly possible. I’m thinking of you.

Thank you so, so much for joining me for the Addressing Isolation and Loneliness webinar. I’m really grateful that you are here. I know that you are here because we are experiencing a pandemic like none of us have ever experienced before. This is pretty profound. And we need to do something about it. We need to address the social isolation and the loneliness that isjust an unavoidable part of this pandemic. So thank you. Thank you. Thank you for showing up today with me. All right. So as you, I hope, no, my name is Genia Stephen. And I ambehind Good Things in Life. I’m a mom to two boys, one of whom has a disability and a sisterto a an older sister to somebody with a disability. I’m a midwife and I work in the healthcare with many families and have for well over a decade now.

And I teach ideas and concepts that were taught to me through my lifetime to other parents in the hopes that they will be able to have the same kinds of wonderful opportunities that I had growing up, to have a disability positive perspective and to support their kids to live a fulfilling, inclusive life at home, at school and in the community. In this webinar we’re going to talk about how to get and stay connected, and by the end of our time together you’re going to have a list of ideas about how your child with a disability can share their gifts and make a difference during this pandemic. We’re going to cover three things. We’re going to define physical distancing. We’re going to talk about being a light and a leader in our communities and we’re going to talk about getting and staying connected. Okay, so we are starting this webinar by talking about the definition of physical distancing because it is incredibly important right now that we understand this.

All of us are like links in a chain and the idea of physical distancing is to break the chain in as many different links as possible. And so let’s talk about that a little bit. What does that mean? So the reason that we want to think about ourselves as links in a chain is because we want to act like we could be positive for the virus and we could infect others. And so even if we have no symptoms, even if you know, we’re spending time with others who are, well, we want to assume that we could be positive and that we could be infectious and only to go places if we must. Now, if you think about getting together with a couple of other people in your social circle, you know, maybe you’ve got some friends that are also, well, they haven’t traveled.

There’s really nothing going on. As soon as you spend time with them, those two links in the chain are connected every time that person has gone to the grocery store. You’re connected also with the people that were in that grocery store. And when you go to the grocery store, you’re also connecting that experience and that exposure to the people that you were spending time with who are well. And so the point really is not just to spend that we can just limit who we’re with two people that haven’t traveled or who are healthy with that. We try and keep the links of the chain separate from each other so they don’t form a chain. If we do have to be with people, we want to stay at least six feet away. And this six foot roll is based on a pretty old study, like actually really, really old.

And so it’s not that six feet is a magic number and if you stay roughly six feet away that you can’t be exposed. That’s not actually the case. It’s just the kind of general rule that we’re going by. But you better off being farther apart. Okay. another part of physical distancing is making sure that you wash your hands before you leave your house so that you are distancing yourself from your, you know, the germs in your house before you leave. You’re not bringing them with you and that you wash your hands when you return. For the same reason you want to be putting some distance between any interactions that you’re having. And when you’re out, you want to use hand sanitizer very frequently and you want to not touch your face. Many people are wearing PPE or personal protective equipment right now out in public, they’re wearing masks or they’re wearing gloves.

When people are wearing gloves, they’re often going out and wearing gloves for the entire time that they are out and moving about. This is not effective use of PPE. It’s not effective use of gloves. Effective use of PPE, including gloves means that you wash your hands, you don’t gloves to, you put the gloves on, you do whatever you’re going to do, you take the gloves off before you move on to your next task and you wash your hands again. So in order for you to use gloves effectively, you would have to have dozens of them and you would still have to sanitize your hands every time you moved in between tasks. So if you’re not doing that and you’re just wearing gloves throughout, you’re actually making it worse. Okay. I hope that this is helpful. Please, please share this information with everybody in your social group.

All right. Now we’re going to talk about being a light and a leader in your community. I am quite sure that you are scared. You are probably very worried, but are you feeling committed? Are you kind of riled up? Are you excited about your responsibility? Yeah, your family, your family has an a real contribution and a responsibility to the community. You know, we often are on the outskirts and we have experienced vulnerability. And in this pandemic, our kids, our loved ones with disabilities are vulnerable in many ways that we’re not going to get into during this webinar. And there’s a lot of conversation going on. You know, between families, between parents, about our vulnerability and the dangers to our families. But we also have a responsibility. The fact that we are vulnerable perfectly positions us to make a positive difference. We know how much it matters when somebody reaches out.

We understand what’s at stake. People need connection and we can help. And as members of our community, as citizens, our children, and we as parents, our whole family has a responsibility. Now you might be thinking like, what really are the possibilities here for relationship building, for building social capital, for addressing social isolation and ending loneliness during this period of time with members of our community. Here’s an important thing to remember. Relationships develop over and the very beginning opportunity for relationship [inaudible] [inaudible] are when is sort of the need to make social deposits over time. And what I mean by a social deposit is that [inaudible] we are seen by somebody else in a way that it is interpreted as positive and relatable. And so it’s [inaudible]. I like to think about it as like social touchpoints. We need multiple social touchpoints before we’re ready to feel comfortable with each other before we’re likely to extend conversation to extend invitations before we’re going to be ready to move into a relationship.

In one of the podcasts episodes early on, Janet CLIs talks about walking in her community and her she talks about passing somebody in her community who also walked and that, you know, she kept reaching out to that person with a smile, with a nod. But really it took many, many times before she and her neighbor passed each other on the street before they said hello and actually spoke to each other before they said, Oh, you know, nice weather, we’re having that kind of thing. And all relationships start in some capacity like that with these deposits. These social deposits, these social touch points over time, sometimes relationships develop quickly. Sometimes it takes a long time, but it always requires that we are seen by others in a way that’s interpreted as positive and relatable before an opportunity for relationship opens up. So I’d like you to pause here.

You grabbed some paper and a pen if you don’t already have one, because we need to start making some lists of resources in order to come up with some ideas around how we can be a light and a leader in our community around addressing isolation and loneliness. So the first thing that I want you to make a list of is what is lovely about your child with a disability. You can make a list about everybody in your family and your household if you would like. I think that’d be great. But make a list and get it started. And this is the first step in the how.

Then write down another list and make that list a list of the skills, strengths, and gifts of your child with a disability. And again, it can be you can do this for every person in your house. I really want you for these lists to add to them over time. So put them somewhere prominent in your house, maybe on your fridge. And read the list. Review them every single day. You’ll be amazed at how long those lists get if you keep them front of mind. And then finally you need to start brainstorming or you would you, an idea is to start brainstorming who needs those gifts that your child with a disability and your family have to offer. And again, review them every day because if you keep reviewing them, you will come up with more and more ideas as we move along. Okay, so here is one idea of how you can start reaching out to your neighbors.

You, there is a template available. This template is available for you to upload and edit for your purposes. And this, the idea here is that while physical distancing is a requirement right now, it’s really important we still have a responsibility to take care of each other and that means reaching out. So if you don’t know who is vulnerable and in need of your support during this period of time in your neighborhood, then consider sending a letter to people. Google allows, G mail allows you to create new email addresses so you can create a specialized Gmail account as I did here. In order to keep this focused and also for a degree of safety. So if you are distributing this widely in your community and you are unsure who you’re distributing it to, you don’t know your neighbors, you’re worried about online safety or giving out personal information, then you can create a specialized email address for this purpose.

Okay. You can also think about what kinds of activities that your child can do that might fall into those categories of their interest, strengths, gifts, and figure out who needs the who needs to be contacted. You know, who really would benefit from knowing that you are thinking about them. So creating, you know, the cards, artwork and or notes and delivering them to people. Some people may have a dog that needs to be walked raking and cutting your neighbor’s lawns or weeding their garden, shoveling snow, you know, depending on where you are in the world, watering plants or the lawn. This is probably going to go on for a while, unfortunately. So we’re probably going to move through at least the spring season. Some of the things that I’m going to be talking about in this webinar are things that would need to be considered within the context of the recommendations in your community.

And you know, just what you can do safely, for example. So you wouldn’t want to go into your neighbor’s house to grab their dog and take their dog for a walk even if you were invited because then you have violated social distancing. So you’d have to come up with a creative solution around how the, where the job would be and where the leash would be and how you would clean up after yourself to make sure that you’re not sending germs. And out of that at house, you can make paper from old mail and send notes. I particularly love this idea because we have a very large pile and collection of old mail and flyers and things that we haven’t had a chance to go through. I also love this because for our kids who are missing out on movement, who are missing out on tactile experiences, who have some sensory issues and really like to get their hands into things, making paper is something that you do not need a ton of dexterity to do or fine motor skills. You can get some, you can make paper with different things you’ve got around your house. So it’s a really accessible activity.

Another idea is to have your family and specifically your kids watch different videos around hand-washing and send them to favorite family members and friends who are not taking this seriously yet. Another idea is to organize and distribute a schedule for park cleanup, a local park cleanup. Again, this needs to be taken into consideration of what the local guidelines are right now for physical distancing. And you wouldn’t want to do it at the same time, right? You would want an alternating schedule that everybody participates or people who want to participate, participate, but that that where are we? There we go. Everybody participates and the park benefits and the community benefits, but nobody is participating. Directly with each other.

You can start a group story with people in your community using AAC and just a variety multimodal communication. So you know, the stories where people say people will say once upon a time I, and then somebody fills in the next five words and somebody fills in the next five words. This is a fantastic way of of helping people to be introduced to your child’s AC. It’s fun. There’s no immediate time pressure, which I think is massively avail, a massively valuable. So, you know, one of the things that’s really a challenge with AAC is that often is a really time consuming form of communication, at least in the beginning. And so if your child is an emergent AAC user this way, they get to have a ton of fun in a group activity, but they can move that communication along at their own pace, depending on what’s available to you.

You can organize a glow stick party at night so people can go out onto their porches and have a little dance party or their front stoops and glow sticks, a little bit of music. And you’ve got yourself a block party that is physical distance friendly. And then this Easter egg hunt, you don’t need to copy down that link. There is a link in the end loneliness group, the good things in life and loneliness group. But this is an amazing idea that people have come up with. So there is, this group has more than 30,000 members in different communities. You register based on your geographic location and people are creating Easter related art, hanging in their front windows and then with their family going around and having an Easter egg hunt in the community. And and then posting in the group about their success, finding Easter egg hunts finding the Easter.

Mmm. The Easter eggs and the other art. You could also kind of riff off this and create any number of different car-based treasure hunts with prizes for people in your community. And the prizes could need to be something that is safe, that’s cleanable or is not maybe a physical prize at all. But you can imagine that really the potential for this is limitless. And with a community based Facebook group or with a zoom room or a Google hangout, which we’ll talk a little bit about later, you know, there’s a lot of potential to be coming together and having fun with each other over time in a way that inspires some fun joy and humor with your neighbors and allows multiple social points of connection or social deposits. And I’m sure that you can come up with a ton of other ideas of how you can be a light and a leader in your community.

This is a bit of an aside, but many of us have family members who are not so close with us anymore. Not because of something like a pandemic or not because they live really far apart, but because frankly they just don’t get it. And it’s not been easy to have a relationship with them or maybe the way that they have approached your son or daughter with a disability hasn’t been great. This may be an opportunity where people might be more receptive, where people sense of vulnerability themselves. And there they’re real sensitivity to their own isolation. And loneliness may mean that this could be an opportunity to restart and perhaps your child might be able to make a difference in their lives and that that might really help your friends or family members that are maybe a bit of strange to kind of come back into a deeper relationship with your son or daughter.

Okay, let’s talk about staying connected. Okay, so for section, remember relationships develop over time. We need to make social deposits over time. A social deposit is when we are seen in a way that is interpreted by interpreted by others as positive and relatable over time. We develop familiarity and comfort with each other and eventually this creates the opportunity for more meaningful relationships to develop. Okay. So I also just want to pause here and highlight that there are three steps in building social capital, whether it’s in your classroom, your community, or remotely during physical distancing. So pillar number one, identifying your child’s interests and strength. Number two, figuring out where other people are that share those interests and strengths and identifying people who can help allies and gatekeepers. So the very first thing to do when trying to figure out how to help your child to get and stay connected with their classmates, with their peers is to brainstorm where and how the kids in your child’s class are spending their time.

They are finding ways of connecting with each other. Kids are figuring this out even while they’re physically distanced. I’m going to go back here for a second. If you don’t know where and how kids in your child’s class are spending their time and you’re not sure how they’re connecting, figure out how you, who you can ask and figure out how you can find out. There may be a Facebook group for your child’s school or for your community or your neighborhood. There may be, you know, you may know just a little bit about some of those kids, you know, perhaps they are hockey players or artists or dancers or you know, what girl guides. So probably even if you’re not connected really closely, you can track down people who are also connected to the kids in your child’s class. Okay. So you want to go back to that list that you started earlier and identify what is lovely about your child and keep adding to that list.

What are their interests, their skills, their strengths and their gifts. Keep adding to that list. We’re going to talk about that allies and gatekeepers in just a second here. But this is essentially what I want you to try and do. Figure out which social platforms the kids in your child’s class are using. If your child is really young school age, but young, there’s a good chance that somebody is helping them to connect even a little bit periodically in a forum, like a zoom room where kids can get on the screen together and see each other or a Google hangout. And if they’re older, then they will have their own social media accounts. So depending on how old your child is and what their friends are using, you want to be using those social accounts. It has come to my attention recently that apparently lots of younger kids think Facebook is only for old people.

So don’t assume that just because you are on Facebook that that is where the kids in your that’s where the kids are. So you want to identify the social platforms. It might be, Mmm. You know, it might be Facebook, could be Instagram, Snapchat, tic talk or some of the more popular platforms right now. Help your child to create an account for these. You know, we worry about online safety, but right now actually we’ve got quite a lot of you know, ability to kind of be surveilling that and being in helping our kids with that. And if you can ask a classmate, if you have a kid you can get in touch with, ask the classmate to add your child to the groups or the forums that the kids are creating within these social platforms for the kids in their class or the kids in their neighborhood.

Again, if you can’t find a friend to help, then go through the parents and and put a call out. What are the things that’s, that’s a reality right now is that everybody is scrambling to find ways of connecting. And while it may be really scary and feel very vulnerable to reach out to another parent that you perhaps don’t know, maybe you don’t feel totally safe. Even though it feels scary, you have a high chance I’ve receiving an enthusiastic yes, yes, I will help my child to invite your child into the groups. I’m on social media platforms. So reach out. It is worth the research to find those parents. Plus if you’re not already connected with the other parents in your child’s class, now is the time, you know, being connected with the other parents. You don’t have to be best friends with the parents of your child’s friends, but it makes life a lot easier for childhood friendships if the parents know each other and have a connection with each other, so figure it out.

It is worth the work. Now if you cannot find somebody to help or if the person can’t help all the time because you know they’re, they’re not available all the time, you want to try and figure out what are the rules of engagement that guide the way the kids are using social media platforms and you want to follow them. The other really important so you don’t want to do weird stuff is what I’m like. If it’s not cool to post pictures of your breakfast, then don’t post pictures of your breakfast kind of thing. Like you’ve got to figure out what is it, how do they talk, how do they talk and what are they talking.

It is okay for you to provide prompts and visuals and it is okay for the kids in your child’s class to know that you are providing that assistance. The kids are not unaware that your child requires support. If they do, the thing to be really careful about is to be transparent and authentic because there may be some limits to what the kids might want to post if they know you’re there. And if you violate that trust and you think, Oh well I don’t want them to know that’s not going to end well, it’s definitely not going to end well. So if you’re helping your child to post or providing prompts and visuals that you need to be really, really honest. Another thing to explore is whether or not there are online gaming groups that the kids are using. And if there aren’t, figure out whether or not you might create one.

So Minecraft is one example of an online gaming group or online game that allows for groups to form and where you can create private spaces for only invited guests to play. It has some educational value. I’m not trying to push screen time all the time or anything, but they’re, you know, Minecraft is a great example of a place where kids can get together virtually in a relatively protected environment. If Minecraft is just not the thing anymore, figure out what is, you can do things like help your child to host a Netflix watch party when I was a kid or not a kid, even when, when I was a lot younger than I am now. I used to sit on the phone with my boyfriend who’s now my husband and we would like watch a movie from, he was at his parents’ house and I was at my parents’ house and we would talk on the phone periodically.

Used to make my big sister’s crazy cause I was taking him to the phone. But these kinds of experiences where you know, kids are coming together, they’re having a shared experience and then you’re adding an element of communication and interaction. Can you really powerful. You could, for example, within your S those social platforms or within text messaging or within a Google hangout or a zoom room. You could create a game where every time something particular happens in the movie, the kids post their favorite emoji or gift, which you know, you could, you could get a list of in advance for your child so that they were prepared to respond. You can figure this out. And then of course, Google rooms or zoom rooms are tech options that allow groups of people to come together and see each other on the screen.

I hope that this has been helpful. The aim of this webinar is to generate ideas. It’s not to answer all the questions and it’s not, the purpose is not to fix this situation. This situation is very dire. It’s very worrisome and isolation and loneliness are absolutely going to be negative consequences of what we’re experiencing globally right now. But we can make a difference. And the more times when we make social deposits, when we support our kids to make social deposits when we engage with other people, the, the better the outcomes are going to be and the increase, the more we will increase the social capital of our kids and the potential for more meaningful, ongoing relationships. To develop. Thank you very, very much for joining me today. I am really grateful that while I go through this and my family goes through this pandemic that I’m going through with you, I am so grateful that you are a member of my community.

Now, I’d really love to hear from you if you have ideas about how people can address isolation and loneliness, how people can get and stay connected during this time. If you’ve got AAC solutions, if you’ve got social stories, if you’ve got tech solutions, if you’ve got a snail mail ideas, if you have community-based ideas, ways that we can be lights and leaders in our community, I really want to hear about them. The best way for you to share these ideas is by joining the end loneliness challenge. You can join that challenge by going to goodthingsinlife.org/challenge and you will get links to a private Facebook group. And of course you will receive notifications about upcoming additional expert presentations and webinars, including a webinar by owl condo, Lucy on adding social capital to your child’s IEP. Our kids aren’t in school right now, but we have never been clearer.

Why having social capital, like having people around who love you, like you are invested in you and we’ll help you out when times are tough. We’ve never been clear about why that’s important and making sure that the most important things are on your child’s IEP. You know, now is the time to think about it. Anyway, that link again is good things in life.org forward slash challenge and I look forward to speaking with you soon, seeing you in a presentation, having you pop up in a Facebook group or email me. We really are better together, especially now.

Thanks for Listening!

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Genia Stephen
Genia Stephen

Sister, mother, midwife, writer, speaker and perpetually curious. Dedicated to bringing you the voices, ideas and conversations of world class mentors and thought leaders in the field of disability.